It’s Sunday night and here we go again! Samuel will have another surgery on Monday. He’ll have two separate procedures at the same time. First he will have a gastric port installed in his belly, leading to his tummy. He’ll also have a Nissen Fundoplication, where they’ll wrap some of his stomach around his esophagus to help prevent reflux.
We arrived at the conclusion this is needed last week, following his swallow study, which showed he’s aspirating food and liquids into his windpipe and lungs. So we’re not going to be able to feed him as much via a bottle, and the gastric port will let us inject food directly into his tummy.
They did an Upper GI study on Thursday. That’s very similar to the Swallow Study, where they put Barium into his tummy so they could see how everything was formed. The doctors liked what they saw and it allowed the gastric and Nissen surgeries to be scheduled.
Doctors tell us it takes about two or three days to recover and Sammy will have several small nicks on his stomach where they’ll do the Nissen, plus the port that will be installed, likely on his left side.
We hope this is the last medical procedure Sammy will have to have for a while and we’re hopeful this will also lead to his discharge from the hospital, either later this week or maybe next. We can’t wait to get him home, and frankly we’re sick of driving to Stanford for several reasons.
Earlier in the week Sammy also had a test done to see if he’s done with the Rhinovirus and the doctors said he still had it. One of the Neonatologists explained to me that they do a test that’s down at the DNA level, so they look for any remnant of it at all before declaring him “clean”. For now we continue to suit up with a gown, gloves and a mask. Sammy knows our voices, but he really hasn’t seen me and Kristen since he arrived at Stanford.
Also, on Thursday the medical staff put him back on some oxygen. We’re happy to know he really doesn’t need it, but he definitely is breathing more comfortably with just a little bit of oxygen. They put him back on 1 liter per minute at 100%, and are now down to about 0.9 liters at 30%. We want them to send him home on 1/4 liter per minute with 100% oxygen, and we’ll likely keep him on that for a few months. It will not only make him comfortable, but it will be a good thing for me and Kristen.
Once he’s declared not to have the virus and he recovers from this surgery, there’s not really a reason he can’t come home. So we hope to have some good news on this soon.
Meanwhile, Jacob is really starting to become interactive. He’s playing for quite a bit of tie each day, though he’s still doing a lot of sleeping too. Of course he’s a master at crying, and driving his dad nuts. If there’s not enough stress in my life already, Jacob’s good at making sure I have just a touch more.
Today I had a good day visiting with Sammy at Lucile Packard Children’s Hospital at Stanford. I got to hold him for about 3 hours of my 5 hour visit. He did a lot of looking at me, making funny faces and watching me make funny faces back at him. We counted to five more times than I can count, and we sang ABC’s. I played some Beatles and Foo Fighters for him too, for good measure.
During the other two hours, we did another swallow study. If you remember back to late February, he had a swallow study conducted at John Muir in Walnut Creek. They fed him some barium mixed into his formula so they could take a burst of x-ray pictures to see how he was processing the liquid. All things checked out just fine.
During today’s procedure, Sammy did the same study, but this time he was older, and he was positioned in more of a standard feeding position. They fed him the same barium mixed with formula. But today’s results showed he has a very small aspiration into his airway.
This is very similar to you taking a gulp of water going down the wrong pipe, into your airway. If you think about your reaction when that happens, you almost choke and try an catch your breath. Imagine that happening every time you took a drink!
The neonatologist and occupational therapist both reviewed the video, and they had to slow it down to see it. It’s very small, but small drips over time means a lot of liquid. So we’re not going to be able to bottle-feed him much. They did the test today with a thin liquid and a thicker liquid, and they saw consistent results. In the video below, you can see the nipple of the bottle in the upper left, and periodically there are bursts of liquid as he sucks from the bottle. You can clearly see how he process it in his throat. I can’t see the aspiration, but the trained professionals can clearly see it.
So… that means another procedure for Sammy. He will get a G-Port, or a gastric port. This is a tube that will be placed from his belly to his tummy, and it’s accessible on the outside of his belly. Unfortunately this means he needs to be intubated once again and he’ll need to be put under again. But the surgery is short and standard, and babies get this more than you can know.
Once he has this, we’ll feed him about 5mL of food via bottle, and then inject the rest into his stomach via the G-Port. The doctors also say this can be handy for giving medicine too, if necessary.
He’ll keep this G-Port for anywhere from 6 months to two years. He’ll have to see a speech therapist on an outpatient basis. Hopefully overtime as he matures, as his vocal cords heal and he gets bigger, he’ll take more by mouth and less via his tummy. We want him to be able to enjoy the taste of food, but we’ll have to be careful with it.
We’re not sure when he’ll have this surgery, but it’s likely to be later this week or early next week. It’s about a two-day recovery. And then… he’s likely to come home!
So you’re probably thinking to yourself, “wait a minute, Todd, I thought he was going back to Walnut Creek?” That was the plan, but a few things are now in play that likely changes that:
The main reason for him to be transferred back was to learn how to bottle feed so he can get off all other tubes. But if he’s only going to take 5mL per feed and get the rest via his G-Port, there’s nothing else to learn. He can already do that.
The hospital told us the transportation back to Walnut Creek is only covered at 60%. We don’t know what the cost may be, but can reasonably guess a transfer fee by helicopter or ambulance is likely a $25,000 fee at minimum. So about $10,000 would be out of pocket. We don’t quite understand this, but we’re not paying $10k for the convenience of moving him back to Walnut Creek. We’re going to ask some more questions about this. Our guess is the doctors at Stanford may be deeming this transfer “not medically necessary”. We just don’t know.
So Samuel could go home if he continues breathing well with no desats or Brady’s over a five-day period that he needs assistance to recover from, is feeding well via the G-Port and doesn’t have the Rhinovirus.
The doctors started the test to check for Rhinovirus today, he’s doing well on the breathing and we’ll see what happens with the G-Port.
With all that said, it’s possible he could be home by the end of next week. That’s somewhat terrifying to me and Kristen, but exciting at the same time.
Two Months Since Charlie Died
Today marks two months since Charlie died. I think we’re doing about as well as can be expected after losing our son, but it’s been tough. The outpouring of support has been great, and we’ve had an awesome display of help from our family. Thank you all.
Kristen and I think about him often, and we have our moments of weakness where only a good cry will resolve it. I visit with him regularly; his urn is in our bedroom near the fireplace, next to our favorite picture of him. We’ve also placed some photos of him near the changing table in Jacob and Samuel’s room, so they can look at him while being changed. Jacob is regularly smiling at the pictures. Of course we have photos of Jacob and Samuel up there too, so he probably sees himself.
Today I got a nice note from my friend Andrew McVeagh, whom I haven’t seen in about 7 or 8 years, maybe? I used to work with him at NBC in Los Angeles. At any rate, Andrew now lives in Erie, PA and still works for General Electric. Today he shared that didn’t know what he could possibly do to support us in our loss, but was then inspired to start a team to raise money for the March of Dimes. He’s inspired by us, and is using our story to inspire many others to support this great cause. So far his team has raised more than $4,100. Wow! Thank you Andrew for honoring Charlie in such a great way.
For 129 days, Samuel David Mazza has needed some sort of oxygen support. He’s been on CPAP, High-Flow or VapoTherm machines every single day since he was born.
But that all changed on Day 130.
Sammy was taken off his oxygen support on Sunday, April 17th. He was showing everyone that he really wasn’t using the oxygen flow that he was being provided, so they decided to cut the cord and see what he really needed. And he’s flourishing.
If you have been following, Samuel was transferred to Stanford on Tuesday, April 5th. He’s was flown from Walnut Creek’s John Muir Hospital to Stanford to get a new set of eyes on him. Almost immediately the doctors guessed he had a virus, and it was proven the the has Rhinovirus after a test. He was placed in isolation and has been recovering since. He had a really bad cough and had all sorts of secretions that were almost making him gag.
Last week he had a Bronchoscopy and they found things to be very normal, other than a very narrow airway. They suggested the swelling from the rhinovirus and swelling from the ventilator were contributing, but he still had a smaller airway. However that would likely fix itself as he got bigger. Nothing major to worry about.
As we got further into the week, Sammy started to get better. They took out the ventilator on Tuesday, then disconnected his CPAP machine on Thursday, moving him to a high-flow cannula. The plan on Saturday was to move him in the evening to a low-flow cannula. Then on Sunday morning, as his grandma was visiting, they took him off all tubes. They removed his oral gastric (OG) tube as well and put in a nasal gastric (NG) tube so he can continue to get food, but all breathing help was stopped. And throughout the day he did a great job. Kristen visited with him for much of the day Sunday and she’s so happy. And Sammy’s very happy too. He had lots of smiles, which we’ve not seen before, and his cry is getting stronger.
Kristen talked with the doctor and they said an occupational therapist is going to review him to see how his swallow is. That will help determine if he needs another swallow study or not. The doctors will also do a test to see if he still tests positive for the Rhinovirus. If he doesn’t need a swallow study, we’ll work on plans to get him moved back to Walnut Creek as early as later this week. If he still tests positive for Rhinovirus, it won’t necessarily stop him from going back to Walnut Creek, but they would need to have an isolation unit available for him. So we’ll see how things play out this week.
April 9th was the Jacob and Samuel’s four-month birthday, but today is the “adjusted” two-month birthday. It’s adjusted back to their 40-week due date of February 12th.
We’ve been through a lot, but we have a lot to celebrate too. We’ll take an optimistic view of things with a few photos below to celebrate them. We can’t wait to get Samuel out of the hospital to be home and growing, and smiling, like Jacob is.
Today was also my day to visit Samuel in the hospital. Kristen is taking Mondays, Wednesdays and Fridays, and I’m taking Tuesdays and Thursdays. We adjusted Stevie’s schedule to accommodate me working a full day on M-W-F, so she can take Jacob until I’m free. Today I took most of the afternoon off from work and drove over late this morning so I could spend several hours with him.
This morning at about 6:30am he was brought to the operating room so they could do his Bronchoscopy. The doctors tell us there was nothing “remarkable” found. Their only takeaway is he has a very swollen airway. The doctor told me that even with his intubation, which causes some swelling, and his Rhinovirus, which causes some swelling, there’s even more swelling far and above that. They suggested this is just his physiology, and we’ll have to see how far things go down. They were a bit worried that he may be need to be intubated again, but they were going to watch him closely to see.
I kind of feel like they’re way too quick to intubate him, but what do I know?
They’re giving him Decadron, a steroid to try and help open his airway a bit more. So we’ll see how that works for him.
His Rhinovirus seems to be getting better, but it may take him another week or so to get rid of it. He has no immune system, so it will take longer to get rid of symptoms. He still has a lot of secretions.
The doctor said they did an echo on him on Monday evening and he passed with flying colors. They didn’t even see anything that would indicate his pulmonary hypertension that he was diagnosed with before. That’s good news for sure.
They weighed Samuel today and he was at 10 pounds, 6.6 ounces. We believe he’s a little puffed up right now, so he probably weighs a bit less.
So with Samuel, we’re really “take it day by day, and wait and see”. His grandmother is coming in from Costa Rica on Wednesday, so he’ll get a bit more love for the next few days.
By the way, Stanford is nice and I’m sure the people are great. But so far we feel like Samuel’s just another baby there. It shows just how loved and spoiled we were at John Muir in Walnut Creek. We still have doctors and nurses from John Muir checking in on him daily – many of whom read this blog. Thank you for your continued interest in our boy!
As for Jacob, he had a few days of poor feedings, but that’s now gone and he’s setting records. He’s had more than 30 ounces this week in a single day. Today we moved to an 8-ounce bottle and fed him 5 ounces. He took just over 4, but we’re going to see if he can graduate to 5 ounces over the next week or two. He’s very smily these days and he loves seeing other people smile. He’s a happy boy most mornings, and we love to see that.
Today is Friday, and I thought I’d throw together a brief update for everyone on how Samuel is doing. I’ve added in some pictures below.
Samuel’s been at Stanford since Tuesday and it turns out he tested positive for Rhinovirus – better known to me and you as a common cold. So this may be one of the things that’s been causing his problem, or could be the sole reason he’s had such a difficult time. I’m not entirely clear when he got it, or why it wasn’t detected at John Muir. It is a good thing that we had some new eyes on him though.
He’s been doing OK overall. He still produces a tremendous amount of secretions – saliva, mucous and other fluids – that continues to make him cough. It’s really hard to cough and get that out when you have a breathing tube down your throat. So the nurses are having to help him periodically with lots of suction. He does still desaturate his oxygen levels during coughing to the point where in recent days they needed to “bag him” to get more oxygen into him. I’m told on late Tuesday and early Wednesday his desaturation levels went down as low as into the 30’s. We’ve never seen it that low and it’s a serious situation.
They were doing a battery of tests on him the past couple days. They identified the Rhinovirus on Wednesday and stopped the antibiotics they started giving him. They weren’t sure what they were dealing with so they started him on antibiotics as a safety measure in case he had something bacterial, but since it’s viral the antibiotics will not do anything to help. All he needs is patience and time to recover from that virus.
They also did some monitoring of his brain activity just to see what was going on and if everything was normal. When he was coughing his body would tense up, and they wanted to rule out a seizure, so they connected his scalp to an AEEG machine. They noticed some abnormal brain activity, but they believe it correlates to when he’s having his coughing fits, so they hooked up a VEEG machine, with a camera to record his facial expressions and what he was doing over a 24-hour period so they can correlate what’s going on. We don’t have feedback from that yet, but reasonably assume these are just coughing fits. They were more concerned that he may be having seizures. It will be nice to rule that out.
The brain monitoring does appear to have left some marks on his head. Photos of them are shown below. I spoke to a nurse this morning who explained that the AEEG leeds are connected by preparing the scalp first before connection. However the VEEG needs different leeds, and it doesn’t appear as though Sammy’s scalp was prepared correctly. She also said there’s some sort of “glue-like” substance used to connect them to the head. She’s not sure if the problem was caused while they were connected or during their removal, but they were open sores that are now scabbing over. She has filed incident reports with her management and have spoken with the doctor and charge nurse. She believes the people doing the VEEG just weren’t careful.
I explained to her that I’m quite upset about this and would like to talk with the people responsible. It doesn’t seem like they followed procedures and I can’t tell what kind of pain Sammy may have gone through. He’s a defenseless baby and it doesn’t look like care was taken during his testing. If nothing else, I’d like for somebody – other than the nurse helping him today – to take ownership of it and apologize to me. It’s very troubling.
He has a lot of tubes and wires going into him!
These are “burn” marks on his head from an EEG machine used to measure brain activity. We’re learning more about this today. I’m told it may not be painful to him and may be more of a blood blister-type situation, where it looks worse than it is. We’ll see.
Today, Friday, I’m told he’s doing better. He’ll be getting feeds again with formula instead of continuing with the IV. They’ll start him very slow and ramp him up. He will remain on his ventilator until Tuesday, when he undergoes a Bronchoscopy. The nurse today tells me it’s typically done bedside, but because of Samuels’ condition and significant secretions, they’ll take him into a room similar to an operating room so they can be more thorough. For now, the nurses are suctioning every 30-45 minutes to help try and prevent the coughing fits and desaturations.
Kristen has been visiting him each day, and already she’s sick of the 100-mile roundtrip drive, but she has to see her boy and spend time with him. I’m finally well enough that I’m likely to be able to see Samuel this weekend, so I’m excited to spend time with him again. He’s still expected to be sedated, but seeing him will be good medicine for me to feel better about things.
Finally, I can’t do an update and not include a couple pictures of Jacob from early Friday morning.
Samuel has been accepted into his first university and he’s not even four months old! As of today, he was moved from John Muir in Walnut Creek to Stanford University’s Lucille Packard Children’s Hospital. Let me start with the latest news first.
He was transferred by helicopter at about 3pm on Tuesday. Kristen says he wasn’t happy about getting packed up for his trip, but the flight nurse called after he landed and made it safely and said he was going bonkers after they landed too. But he was pretty good during the flight. The flight nurse, Amy, called me shortly after they landed and confirmed he made it safe and sound.
Then the doctor called me and Kristen about 4:30 to report that they believe he has a virus and they’re going to treat him that way for now. He’s also going to be intubated again. The coughing, they believe, is tied to him not getting enough air into his lungs and they’re not sure why. So to calm everything down they’re going to put him on a ventilator for about 48 hours and let him stabilize and calm down. They want him to get into a good breathing pattern without issue for a while.
Kristen is driving over there now and I’ll watch Jacob. I’ve recovered enough that I’m not contagious.
This change of hospital comes after some recent degradations with his coughing fits, the need for more access to specialists and after a meeting with his doctors and nurses on Monday.
When Sammy’s not coughing he’s a wonderful baby. He’s calm and he needs minimal oxygen. In fact I’d say there’s a good chance he doesn’t need any oxygen at all.
But something is making him get into these coughing fits every few hours. They can last just a few minutes, but in recent days they can last up to an hour. He gets going and spirals out of control and he just can’t stop.
The doctors don’t know what is causing this. It started on Easter Sunday and was somewhat connected to vomiting. He would get a feeding and then he’d spit it up a while later. That was supposed to go away with the Pyloric Stenosis surgery. Dr. Hui reviewed things again and had no reason to believe there’s an issue with that surgery. They did see last Monday that he was having a tremendous amount of gas in his belly, and they put him on an IV. Then later in the week he was diagnosed with a Urinary Tract Infection, and put on antibiotics.
It seems that UTI diagnosis was a bad one. It turns out he didn’t have a UTI. But he got about four days worth of antibiotics. More importantly, we pinned our hopes that we knew the cause of his vomiting. That UTI diagnosis cancelled two other procedures that were going to happen late last week: Insertion of a NJ tube and a Bronchoscopy.
The NJ tube is similar to the NG tube, but the NJ tube takes things all the way down to his intestines. The idea is that you take feedings further than the stomach, and if there’s reflux – which is suspected – it gives less of a chance for things to come back up. This insertion requires the radiology department to be involved, and getting time with radiology is tough. It was scheduled but cancelled after the UTI diagnosis.
The Bronchoscopy was also scheduled for last Friday. This is where they send a camera with a light on it down his throat so they can see what’s going on with his vocal chords, his trachea and all the way down to his lungs if necessary. He has to be sedated for this and this requires a specialist to be involved. John Muir has lots of great doctors, but not a lot of specialists for these types of things with babies.
So….we talked with 3 doctors and one of Samuel’s frequent nurses on Monday at noon. Before that meeting, the doctors had talked with 7 or 8 other doctors to get on the same page regarding what to do from there. The bottom line is that the doctors at Walnut Creek didn’t think they could do anything further to help Samuel. They suggested that more specialists were needed and getting access to one person per week – twice at best – wasn’t enough for what he needed.
The nurses also have been suggesting that a change of scenery was needed, and ultimately we listened to all the advice and decided a change was indeed in order. So we made it.
So, what’s a guy to do when he has to isolate himself? He reconciles his medical costs!
First, we’ve received very few actual bills. It’s amazing how slow the hospitals and doctors are, and then they all have to use their own medical billing company, and then they deal with insurance companies and then you’ll get the bill.
To make matters more difficult, my company caused a huge problem when they shifted their medical processing company on January 1st. Despite my having done everything correctly, they caused a huge amount of stress by not moving the boys over as “covered” to the new provider. I don’t know what went wrong, but let’s just say I’m not surprised that something like this happened.
Anyway, things are fixed but the problems caused are not. There were dozens of bills processed until the time we figured it out, so Anthem – our insurance company – is still working to fix things. The bills have to be re-submitted and then re-processed. So it’s just really slow.
Then Anthem told me they had their own problem with many of their customers where doctors were processed as “out of network” and not “in network” as required. So Anthem processed about 40 bills as out of network for me and sent me a check covering their portion, so I could cover it with the doctor directly. The problem is these were all in-network. Once again it took me discovering this and bringing it up to Anthem.
I do have to say the people at Anthem have been quite helpful. There are two people who seem to be making their way through our stuff, fixing things. It’s just very, very slow. So even when I get a bill these days, I’m not really sure if I should pay it as I don’t know if it’s the correct amount or not. On the opposite side of the coin, Anthem has snail-mailed me more than 1,000 pieces of paper so far. Most are 1 page of “Explanation of Benefits” and three pages of the same, exact conditions, appeal process, etc. Thanks for killing all those trees, Anthem! No wonder insurance costs are so high.
Anyway, on to the fun stuff. Since the triplets were born there have been 203 separate bills that have been processed to our insurance company. 141 of them have come this calendar year, with the rest coming last year since December 9th.
Of the 141 this year 78 bills that appear to be processed correctly since the start of the calendar year. That leaves 63 bills that have some level of question on them. Some are being processed still, some have been denied and some may still need to be fixed as they are still assumed to be processed as an “out of network” provider.
If we didn’t have any insurance, we’d be on the hook for $5,425,330. Yep, that’s $5.4 million dollars! And this is only through mid-March. Samuel is still in the hospital without a clear end in sight.
This is the amount that the hospitals and doctors have billed the insurance company. Of course, this is never the amount they’ll actually get paid. (This article does a nice job explaining why.) I think the hospitals, doctors and other medical providers are probably getting paid $500k – $750k so far – give or take. That’s still a lot.
Our out of pocket costs are capped at $10k for the year. It’s a lot, but we’ve been saving for many months. But we haven’t paid much yet while we wait for the billing to get straightened out.
So, in closing, if you plan on having triplets, get ready to get your masters in Insurance billing. It’s a lot of work to keep track of all this. And consider getting a second job!